Is it possible to have RLS without the need to move your legs all time for example just experience pain when at rest?

[Sleepy247gh]

rls, pain, restless, legs, help,

[Madlegs1]

The urge to move is a main component of rls diagnosis.

How exactly would you describe your pain.? Itching, shooting, burning, tickling?

Is it helped by paracetamol or ibuprofen?

Can you get to sleep despite the 'pain'?

[Sleepy247gh in reply to Madlegs1]

Hi

The pain that I have is like a burning sensation and can vary to manageable to extremely painful where I do have problems sleeping. I have had this pain in my feet and legs and hands and arms for about 10 years now and it was just diagnosed as just general nerve pain, but recently a neurologist diagnosed it as rls, I could not understand this because I only have the pain and not the urge to move my legs or arms at all but he said that all the other symptoms fit, I just wondered if anyone else had been diagnosed with rls without having the restlessness.

The pain is not helped by paracetamol or ibuprofen and I have previously been on amitripyline which seemed to help but I was struggling with the side affects. More recently I have been on gabapentin which took the edge of but when the pain was at it's worst it it seemed like they did not work at all. I have had all the usual tests for iron and vitamin deficiency etc and all is normal there. I was just a little confused on the diagnosis.

[Madlegs1 in reply to Sleepy247gh]

I agree with you- it certainly sounds more like some neuropathy.

Some people describe rls as burning, but the urge to move is a basic requirement.

Gabapentin or Horizant or Pregabalin are all medications worth trying.

They need to be taken for at least 3 weeks before being really effective.

Good luck.

[Hidden]

I agree with Madlegs, this doesn't sound like RLS at all. It does sound like nerve pain, it seems to me that the neuorlogist can;t explain why you're having "general" nerve pin so is simply putting he RLS label on it.

The label doesn't fit. I don't really know what "general" nerve pain is anyway.

I wnder what tests you had, if any e.g. did you have any blood tests typically for Diabetes Vit B12, did you have an MRI?

Was fibromyalgia discussed with you?

[Sleepy247gh in reply to Hidden]

Hi Manerva,

Thanks for your reply. Yes I have had all the tests for B12 and Diabetes and all were normal. I have recently just had an MRI of my head and back and although there was a little degeneration in some of my disks there was not enough damage to cause the pain I was experiencing it also does not explain the pain in my hands.

Fibromyalgia has been mentioned in the past but not really discussed in detail. I have just done a little reading up on it and to be honest it does fit, well better than rls anyway.

I think I will explore this a little further with my GP.

Thanks for all your help, I was really not happy with the diagnosis of rls cause it did not seem to fit and you have helped me understand a little better.

[Hidden in reply to Sleepy247gh]

I'm glad that you feel I've helped, if only a little. I hope you find a solution, it's not RLS.

[Hidden]

This is the criteria for RLS... note the the urge to move is used for each part of the criteria. irlssg.org/diagnostic-criteria

[Sleepy247gh in reply to Hidden]

Thanks Elisse2, this was very helpful.